Hello- I am new :-) Any advice/hope/reassurance?

[Cyclingchick]

Hello everyone, looks like this is a really supportive community.

I have what I think is possibly endometriosis. I am still awaiting on another GP appointment/discussion, but had an internal ultrasound today and the radiographer suggested it 'could' be endometriosis as when they pressed on the uterus, one of the ovaries would move, whereas the other side did not move as much, which she suggested could be due to adhesions.

To be honest I'm pretty gutted. I'd consider myself really fit and healthy otherwise, just these debilitating symptoms have crept in over the last year or so, particularly the last few months. Normally I'd say I have a pretty high pain threshold (most cyclists do...) but this has had me pottering home from my placement and also throwing up in bed due to the pain.

Of course my wonderful mind has gone from 0-60mph about all the possibilities etc... but for now, has anyone got any tips on living well with this condition? I feel like I really need to get the cyclical pain under control (GP has prescribed me Naproxen- do people find this effective?). I am also worried about it getting worse, as I am only 24.

What are your best tips for getting an accurate diagnosis, and for living well with this condition if it is endometriosis?

Thank you all in advance

[CurlyandConfused]

You need to be referred. The gold standard for diagnosis is a laparoscopy but sometimes they do MRI scans which can also show endo. Ultrasound cannot really be used for diagnosis (it will only show endometriomas (cysts)).

Treatment is really depend on symptoms and how severe it is and often a combination of surgery, pain management and hormonal treatment/pill/coil. But it is all very individual. You need to get referred first.

[Cyclingchick in reply to CurlyandConfused]

Thank you that's really helpful. Do you have any information about the process of diagnosing and how effective each method is?

I would rather not have a laparotomy if I can avoid it due to the risks associated with surgery but would be interested if MRI is an option.

So would that potentially suggest that the ultrasound isn't really very effective for diagnosing? Thanks again.

[CurlyandConfused in reply to Cyclingchick]

Not a doc, just a patient. From my understanding, a lap is by far the best. I have friends who had clear MRIs and they still found endo during the lap.

Also, a lap is diagnisis and treatment at the same time as often, endo is removed during this procedure. You are only 24, fertility may be something you want to consider further down the line.

See what the consultant suggests but nothing beats the laparoscopy when it comes to endo - both in diagnosing and in treating. A lap is usually done as a day case. just 3 or 4 tiny wholes. Every surgery has risks but really, it is not a big procedure.

[CurlyandConfused in reply to Cyclingchick]

and yes, unless you have cysts (many women have endometriosis without cysts), ultrasound cannot pick it up. a clear ultra sound scan means nothing when you consider endometriosis.